newsletter – May 2014

Welcome to Ndi Moyo’s May 2014 newsletter

A heartfelt thank you from Lucy

Again, you have all made a huge difference to the lives of our patients and their families truly adding life to their days, not just days to their lives. I thank Ndi Moyo UK, Friends of Ndi Moyo, our partners and our Board of Trustees here in Malawi, as well as our volunteers for their continued support.

Without you we could not make such a difference to the lives of so many in great need of care and support.

We are indebted to Dr Lakshmi Walter and family and the Lord Patriarch James Bank Trust for the funding which has allowed us to start building the new Ndi Moyo Palliative Care Centre designed to give enough consultation rooms to enable the Clinical Team to deal with the increasing number of patients with a good degree of privacy that we now almost totally lack.

I thank God for such unconditional love towards our patients, their families and the caring team we have at Ndi Moyo. I thank you from the very bottom of my heart for your help and invite you all to come and see the work your support provides.

Lucy Finch.

Ndi Moyo founder

(and Queen, for the opening of the new garden in February 2014 – above)

IN BRIEF

A medical volunteer reflects on how well Ndi Moyo’s clinical team provides holistic care and how the smallest things can make the biggest difference.

Volunteer Clinical Director, Kathryn Hamling, halfway through her two year contract, welcomes progress at Ndi Moyo including a strategic plan and the proposed new clinic, laments the challenges to expanding care into outreach clinics, and enjoys life beside the lake.

As UK Treasurer, Hassan Pillai, prepares to step down he looks back on Ndi Moyo’s growth from an annual budget of £1,500 in 2005 to its current £130,000-a-year operation. And he looks forward to a sustainable future for Ndi Moyo.

Great news for our patient Sunshine who has responded very well to chemotherapy

And many many thanks to all our friends and supporters.

After volunteering at Ndi Moyo in early 2014, Dr Amy Briffa considers the difference in palliative care practice around the world:

I am writing from the Isle of Lewis, off the west coast of Scotland, where I am working as a GP for the next few months. It is grey and breezy today and possibly just about to rain, the landscape around me is crofts and peat. Quite a contrast then, to think back to my time in Malawi, to the bustling town of Salima with its bicycle taxis and at times sweltering heat, and of course the NdiMoyo palliative care clinic.

I was privileged enough to be there for a month from the middle of January 2014 – something which even now seems a little unreal.

I have been reflecting on some of the main differences in palliative care from my experience in the UK and that offered at NdiMoyo. Unsurprisingly the resources available are far more limited in Malawi – whether that be access to specialists, treatment, or tools for investigation such as imaging equipment or blood tests. The prior knowledge of this made it no less of an adjustment when experiencing it first-hand. During my experience working in palliative care as a trainee GP in Scarborough, I got used to working in a well-resourced environment with highly specialist treatments and interventions on tap. At NdiMoyo I found that the team were used to working with what they had, in the knowledge that even that could become unavailable at any point.

I remember learning during a palliative care elective as a medical student, that

palliative care does not say ‘there is nothing we can do’

and should always be looking for ways to maximise a patient’s quality of life in an individualised manner.

Seeing the work at NdiMoyo, I feel I truly witnessed this – holistic care for patients, and in the context of much more limited resources than I was used to. I saw how the team went through a patient’s story from the beginning, taking into account their individual circumstances, found out the patient’s priorities and problems, and worked as a team to address these. I saw how the care provided by NdiMoyo filled many gaps in the general health care available from the state.

In the weeks prior to leaving for Malawi, it is fair to say that I was experiencing some anxieties about the trip. I had a lot of questions. Why was I going? Would I be any help?. What I found was not necessarily answers to my queries. Instead I felt so privileged to be involved in a team that, for a short time, I could slot into and be involved in the day-to-day operations of. I was able to contribute some positive things from a GP perspective, but really I learned so much more.

It is a team that works very hard every day to understand patient’s difficulties and work towards alleviating them – sharing ideas, learning from each other through different patient cases and during teaching sessions, and each having varying and valuable experience to bring. I was welcomed warmly into the team, learned from highly experienced colleagues and found some joy in unexpected places. The annual patient party was a real highlight, from getting stuck in with the food preparation to dancing in the compound to some African rhythms – Malawians know how to throw a party.

This was my first real experience of health care in a developing country. There are so many differences in what is available to the patients I am seeing now in the UK, and those I saw at NdiMoyo, but essentially it is the same – seeking to provide symptom control, whilst providing psychological and social support. Doing this with what is available, however restricted, it is important to remember that it is often the smallest things that can make the biggest difference. Sometimes, like in normal life, it can be just being there, a friendly face;

I was struck one day by a patient’s overwhelming gratitude just that the NdiMoyo team had come to see her – that she mattered.

I started writing about the differences, but the important if somewhat obvious point to realise is that fundamentally across the world people have the same need for genuine care and attention. This is something that NdiMoyo strives to provide for their patients who are struggling with life-limiting illness, and does so beautifully. So thanks to all the team at NdiMoyo and special thanks to Kathryn and Peter Hamling – whose support was invaluable.

Dr Amy in Malawi, with Kathryn and Peter Hamling

Update from Sub-Saharan Africa!

from Kathryn Hamling, our volunteer Clinical Director.

Approaching April 2014 was a frightening experience as it dawned on us that we were half way through our contract at Ndi Moyo. In many ways the time has flown past but in others it feels as if we have been here for years so settled are we.

The rainy season has come and gone since the last newsletter went to press. This was for me a new experience. By mid-December the ground was very dry and the heat almost unbearable as the pressure grew. All around the fields were ploughed in neat rows as far as the eye could see… all by hand and mainly by women, often working 6am till 6pm with the baby tied unto their backs as they dug and cleared the dusty hard soil in readiness. When the rains came, they would be torrential, often preceded by great crashings of thunder and sheets of bright lightning. As the first storm broke there was great celebration all around, even by us! Imagine a Fort William pair dancing with delight at rain pouring from the heavens?!?

Two days into the rains, the fields were alive with people all out planting the maize, the staple crop, again all by hand, and then as the plants began to grow, out again with a bowl and teaspoon applying fertiliser to each individual plant! Such labour-intensive work but hardly a square inch of land remained unplanted. Now four months on, the maize plants are being harvested after a good season. It will be good to see more affordable maize flour available again as pre-harvest the effects of hunger were becoming more evident by the day. Ndi Moyo supplied maize and protein-enriched soya to the most needy of our families and many were helped during that time. Infinite need and finite budgets – the same everywhere, just more immediately stark here I think.

The falling rate of the Kwacha has pushed all costs up, not helped by the cutbacks from the corrupt government who have lined their own pockets and managed to reduce aid into the country, ensuring the poorest struggle even more. As election fever builds, the fight for the Presidency is being hard contested. People here queued for hours to register and the day of the election is declared a public holiday to try to encourage everyone to vote. Many will walk miles to their polling station and they will stand in the sun for hours waiting for their turn. We hope the time will pass without violence and the results help take the country towards a more settled, more prosperous time.

Work remains very busy within our respective roles but progress has been made in that the much-sweated-over, many-drafted Strategic Plan, 2014 budget, Business Plan and audited accounts have at last been accepted and passed by the Board of Trustees which has made Peter an altogether happier volunteer and life partner! Fundraising has now become his top priority as the pressure mounts to bridge the gap for funding between what is now needed and what can be confidently raised by the amazing band of supporters. This is an area where Peter feels less comfortable with but will I am sure rise to embrace.

After a rather anxious time waiting for news that the funds for the new clinic build had been secured, this too has happened and the contractors are currently clearing the ground for building, which should start in the next few weeks!

Meanwhile life goes on in the rather crushed quarters we currently use. I find I have gotten used to the lack of space/privacy and think nothing of squeezing between clinician and patient to reach for a new set of notes or to pass medication to a waiting patient. Everyone just gets on with it and on most occasions the lack of privacy only seems to bother the staff as patients all seem to know each other or if they don’t before they come to clinic, they do pretty quickly and then there is huge exchange of information, advice and rivalry over medication given, support in the form of food or blankets etc., as no one wants to be outdone in what might be available. I had a patient recently who demanded morphine as I handed over his Paracetamol, Brufen and other meds. Thinking I had missed the prescription I rushed back to pharmacy to check his notes. No morphine had been requested or indeed had been given previously, and on return to tell him this (in my pigeon Chechewan) he pointed out that his neighbour had a bottle of something so he wanted one too!

Those who have been following the newsletter updates may perhaps remember that a lot of my time was focussing on developing the outreach clinics by expanding teaching/mentoring sessions to the health professionals in the outlying clinics and General Hospital. These have been challenging in the extreme. Despite an initial wave of enthusiasm, it has been hard maintaining momentum and forever frustrating. However, with lack of management support, poor premises and poor access to even the simpler drugs I can understand how difficult it is for them to change or show any commitment. We have had some success in some areas and there is nothing for it but to keep focussed and move slowly forward. Nothing changes quickly here or indeed moves at any great speed. Drip, drip…onwards and (hopefully) upwards.

Having a recent spate of young UK doctor volunteers has been a good uplifting experience. In January we had Amy, a GP from Glasgow who volunteered with us for 4 weeks while her husband was with another project in south Malawi. [Amy’s reflections on her experiences are below]. We have had two final year Medical Students on their elective placements and are hoping there may be other opportunities for others later in the year. We have been doing some training in clinical skills for a number of Malawian health professionals and have had many visits from Malawian medical students, some of whom carried out a research project at Ndi Moyo (currently awaiting publication). As well as being a great help in the clinic setting, it’s good to have some young blood around and keeps my brain active in ensuring I know enough to make them think I know what I am doing! I seem to have managed this so far.

The patients we see remain in such desperate need. It is hard to describe sometimes the awful things one sees on a daily basis when there is little on offer but even so, a little helps such a lot.

I recount some of the stories in my fairly regularly updated Facebook ramble for those who want a more graphic picture and alongside these are some happy camera snaps of fun times with patients too, so it’s not all awful. We continue to enjoy the benefits of living in this lovely part of the world and although our travels were for a time a little contained with the rains, we are currently dusting down our tent for further adventures.

We still love our evening lakeside strolls, watching the lovely cloud formations (and during the rainy season, the fantastic lightning storms within these), seeing the ever-changing colours of the sunset when no two days are the same, and just being lulled by the lapping waves on the sandy shore. The level of the water has risen again again with the rains but the lake is now swimmable in again following a period of muddiness washed off the hills around the lake. We missed our daily evening swims for those few months so we are now making the most of balmy Autumn days. Work can be tough but the fact this can be offset by enjoying our sun-downer most evenings still sitting outdoors makes it all worth it.

NdiMoyo’s visiting oncologist is pictured here with our clinical team on a visit to NdiMoyo

It is with great regret that NM UK says goodbye to Hassan Pillai, who is stepping down from his role as treasurer and trustee on Ndi Moyo UK’s board.

Here he considers how far Ndi Moyo has come, and what the future holds.

My journey with Ndi Moyo

My name is Hassan Pillai. I am one of the founding trustees of Ndi Moyo. It seems that the past nine years of my involvement in this capacity have just flown by. As I am about to step down from ‘official’ involvement with Ndi Moyo, my fellow trustees have asked me to write a few words recounting my ‘Ndi Moyo story’. The difficulty is keeping this to a few words.

It just happened that I was visiting Winchcombe Pottery and one of my very favourite people, Pop Finch, Tony’s father, in December 2004, when I sat with Lucy and she told me of the tremendous caring work she was doing from her home in Malawi. At this time Lucy’s work was from her back door and funded by Lucy and Tony themselves, family and friends.

It didn’t take much to realise that her dreams and vision, which we have all come to know, could best be achieved by registering a charity. I had been hooked by Lucy’s dedication and her expression of the need. My recent experience establishing another charity would prove most useful, in addition to a new interest in Complementary Therapies working with cancer patients in Cheshire.

Thus my story began, which I imagined would be a short experience.

Instead, I ended up going out to Malawi in 2006, 2007 and 2010 for up to five weeks, on each occasion to ‘try to help’. Very fortunately throughout this time I have had the support of my wife Anne and my family.

Ndi Moyo, the UK charity, was registered in 2005, with the aim of generating the funds needed by Lucy. This also required the establishment of Ndi Moyo Palliative Care Trust as a registered charity in Malawi, which at the time needed annual funding of £1,500 per annum; the Malawian charity would have its own local board of trustees. Registering the charities would also mean that proper governance and financial/operational processes would need to be established, and in Malawi, I am sure that Lucy and Tony would be first to agree that they did not have experience in this respect.

Their first call for help was to Maureen Morgan, my fellow UK trustee, who visited Malawi in 2005. My background was in banking and project management so I felt that perhaps I should follow in Maureen’s footsteps and help in Malawi with my visit in 2006. I had lived in Africa when I was quite young and had the seeds of great fondness for the people there. Malawians only enhanced this view, and the team that Lucy had already established around her soon became friends for whom I continue to care a great deal. My second visit also meant being left ‘in charge’ as Lucy and Tony returned to the UK for their annual vacation with their family here, giving me a wonderful opportunity to bond with the team. The construction of the compound wall also needed managing.

My visit in 2010, when I took two nurses who now specialise in Complementary Therapies at the Christie Hospital with me, enabled us to provide skills in a range of massages, which are effectively used in the UK in palliative care. We trained 15 staff members and local physiotherapists along with one of the Malawian trustees. We had also been able to purchase a Toyota 4 x 4 ahead of this visit (I mention this as the dust roads and severe conditions will mean that this will need replacement soon at a potential cost of £20,000).

Throughout each of the visits I was fortunate to meet and spend time with the patients of the centre, on many occasions driving out to villages to see them in their simple village hut homes. This was always very moving, especially in the case of one young boy of 16 years who very sadly passed away minutes after I had seen him in 2010. He had been a patient of Lucy’s since 2004 and I had got to know him more with each visit. During my time as a trustee for Ndi Moyo UK, I have always felt that palliative care must be provided in a way that is effective yet sustainable. This requires the organisation to be well managed and well funded. Management needs to address the organisational and financial needs while also recognising that the charity would not exist without good communication with, and the acknowledgement of, its supporters. As the funding charity we have gone a long way towards achieving this, and I hope that I have been able to help in this process.

In the nine years to date, the annual budget has grown to £130,000, with the majority of this being provided by UK supporters. A phenomenal achievement.

As I mentioned earlier, the charity in Malawi has needed a great deal of guidance in operational and financial management, all part of a fast-growing initiative. The trustees in the UK have been instrumental in providing this support, but it is also pleasing to say that during the past two years an effective management framework has been established with Tony and Lucy steadily moving into roles of guidance, advocacy and fundraising, rather than direct management – ‘Founder guided’ rather than ‘Founder led’.

These changes have provided me with the opportunity to acknowledge that I have given as much as I can to a ‘fledgling’ charity, making it also an opportune time to step down in the knowledge that the focus is now on sustainability.

Living, and dying, without pain and with dignity is a right that we should all have no matter where we are in this world. Ndi Moyo is helping the poorest of poor in Sub-Saharan Africa and I have relished and enjoyed my journey with the charity in this quest.

Thank you.

Hassan Pillai.

Remember our lovely patient Sunshine, from the last newsletter?

After a successful course of chemotherapy she is now walking again, mostly without crutches. Ndi Moyo will monitor her weekly in this two-month break from treatment. Sunshine wants to take a literacy programme at school so she can learn to read and write.

Sunshine says, “Now I am not the Sunshine who gets new; now I am the old Sunshine who I was before I got sick.”

This photo was taken as Sunshine left Lilongwe hospital with Ndi Moyo volunteer, Heide.

The foundations of the new clinic are pegged out with sincerest thanks to Dr Lakshmi. Much more news about the new clinic to come in the next newsletter…

Ndi Moyo would also like to thank Intercare for their generous donation of vital medicines.

And as always, great thanks to the generous people of Draperstown in Northern Ireland whose pennies from heaven through the local primary school and various collections continue to support Ndi Moyo’s work.

A great big thank you to all our friends and supporters who make our work possible.